Haemophilia - the Royal Disease, the Christmas Disease.

PA George Tharakan (1944 – 2013)

[He was the bravest man I have met. From his childhood he struggled with a crippling disease. Even while enduring bouts of severe pain there was always the charming smile that was his trademark. He did so much for patients like him and for others including the poor fishermen living along the coast. He had a large circle of friends from all walks of life.

This post about him was written by my brother PK Hormis Tharakan IPS (Retd.) who was the Director General of Police, Kerala, Chief of RAW and Advisor to the Governor when Karnataka was under Presidents Rule. I am proud to publish it.] 

 

When I read on Thursday morning (Feb 20) about the Haemophilia  Centre at Aluva being inaugurated by the Chief Minister, my thoughts went back to the day when I handed over a letter from my cousin , late George A.Tharakan, who can justly be called the founder of the Haemophilia Care movement in the country, to the Chief Minister's Office. I still have a copy of that letter, dated June 5, 2012 on my computer.

In that letter, George (whom we called Vakkachen) requested the Government to implement a comprehensive scheme for haemophilia care in the State. He also attached a specific proposal, seeking government sanction to start a Comprehensive Haemophilia Centre in the District Government Hospital, Aluva, where a Dialysis Centre and a Blood Bank were already functioning under public-private partnership.

I am glad that today my cousin's dream has come true. He did not live to see it happening. He succumbed to haemophilia-related problems on the 23rd of February 2013, almost exactly a year before his dream materialised. His family and numerous friends are getting to ready to honour him with a memorial service on March 1.

Haemophilia is a disease about which not many people know. As George clarified in his proposal to the Government, Haemophilia is a hereditary bleeding disorder caused by the lack or absence of one of the 13 clotting factors in blood. If the deficient clotting factor is Factor VIII, it is called Haemophilia A, or Classical Haemophilia and if the deficient factor is Factor IX, it is Haemophilia B, or Christmas disease. Though a hereditary condition, 30% of the haemophiliac cases are without previous history. Haemophilia is also known as the "Royal Disease” because it affected the Royal Families of Europe, like Russia, Spain and Germany, through the daughters and granddaughters of Queen Victoria of England.

Being a haemophiliac means having to endure unbearable pain all through one's life. It also means having to incur crushing financial burden because the cost of the factor concentrate needed by haemophiliacs is prohibitively and unbelievably high. I realised this only when I was trying to help with the procurement of the medicines required by George in his last days. That is why I would like to compliment the Chief Minister for having acted on George's proposal and all the others who worked to realise his dream, including Dr. Vijayakumar, Dr. Rema Pai and Dr. Vijayaraghavan of the Planning Board.

But it is important that the remaining proposals in George's  scheme, like the collection of data on haemophiliacs, provision of testing facilities in medical colleges, supply of medicines and factor concentrates at subsidized rates for emergency treatment, prophylactic care and ensuring the safety of the product of treatment are also implemented soon.

■